This blog began when I chronicled a 3-week family vacation pulling our travel trailer from Texas to Northern California. Packed in with our five unschooled children like sardines in a can, we made it to California without resorting to cannibalism. In fact, we had a great time! So the chronicle continues... no longer on vacation but still groovin' on a great journey.

Saturday, July 30, 2011

LA Times

Two blog posts in as many days! Crazy. You know what this means, right? I've started another writing project. And my Propensity Towards Procrastination shall land me repeatedly here...at the blog...every time I sit down to write. So, hello! How are you? How are things? Please...tell me. Otherwise I might have to (gulp) write. something.

We went to Los Angeles last week, remember that? We've been going to Los Angeles since Jules was seven years old. It's not for giggles - we go because Jules has a tumor and we see a doctor at The House Clinic, where they monitor and treat more of this type of tumor than anywhere else.

Jules is now 13. And he's bigger than me. The first time he had an MRI in Los Angeles, I carried him down the hall. Obviously, I don't do that anymore.

As we sat in the San Antonio airport I casually said, "Did we ever confirm the appointment?" We've learned over the years that it is prudent to confirm appointments at this particular clinic. "I mean, we know the hospital appointment is confirmed...but what about the clinic?"

Jeff called the clinic. While we were boarding our flight. And guess what? They'd cancelled our appointment and we were supposed to have somehow known that. I guess somebody was supposed to have called us. On any one of the 3 phone numbers on file for us at the clinic.

Now we're knocking our way down the aisle of the plane..."We're flying in from Texas. No, RIGHT NOW. We're on the plane right now. Nobody called us."

What was the point in our calling to confirm while already on the plane? We did it for the same reason we go to Los Angeles every year. To make ourselves feel better. To reassure ourselves that everything is bumping along as it should be. Yes, yes...we're just calling to confirm our appointment...ta da! Yes! We knew we had an appointment, just calling to confirm! Thanks a lot!

Only this time? We didn't have an appointment and we had to see a Different Doctor.

Reassuring ourselves. That's why we go to Los Angeles. Hello! We're just here to have an MRI to confirm that this tumor isn't growing! Just here for that confirmation, thank you very much. Just checking...just a formality and all that...we'll just be on our way for another year, now.

Only this time? We didn't get that confirmation.

The Different Doctor told us immediately that the tumor had grown. And I didn't believe him because he was a Different Doctor. He told us the measurements of the tumor and the measurements fluctuate from year to year...one time a tad bigger, the next time a tad smaller...because whether we like it or not - this medical business is not an Exact Science. In fact, I suspect that it is Actual Voodoo. And with every fluctuation, our doctor has announced that the difference wasn't measurable or significant or something like that and then we would vacate the premises feeling all victorious, like we had personally done something to keep that tumor in check, like we'd won a game or defeated an adversary or achieved some kind of Concrete Goal. Woot! It didn't grow. I know...we're awesome, right?

The exam started badly with the Different Doctor walking in and flipping casually through Jules' very thick chart. I hate it when they do that. I feel like I can't talk, because the doctor is "busy flipping through the chart." Talking to a doctor while he's flipping through a chart is like talking to Joel while he's playing a video game. Not very satisfying. I could have given him the entire low-down in under a minute and he wouldn't have had to look at the chart except for maybe some confirmation but I didn't say anything and he silently flipped before asking Jules how his hearing was in his right ear. Seeing as how Jules is completely deaf in his right ear and seeing as how the doctor was sitting on his right side, Jules didn't even hear, much less, answer the question. I sighed. So much for the effectiveness of chart flipping.

"It's on the cochlear branch, not the vestibular," I said like some sort of expert.

So you can see how at this point I wasn't really putting all that much stock in his proclamation. He started talking surgery and I started tuning out. Where's the Real Doctor?? I wanted to shout. Because this guy didn't seem to understand How This Worked. He was supposed to say it hadn't grown and then we were supposed to march out through the waiting room with We are the Champions playing in our heads, past the other patients who may or may not be quite as good at prohibiting tumor growth as we were and wasn't that sad and tragic and everything and then we would go to China Town for some so-so Chinese. That's how it Always Worked.

I didn't believe the Different Doctor. But I didn't disbelieve him, either. We were told the Real Doctor would call us later. When he was done with brain surgery yada yada. Like anything he could have been doing meant anything to me now that Different Doctor was making all sorts of ridiculous statements involving words like growing and surgery.

Jules didn't hear most of what the doctor said, but he'd heard enough. I assured him that we hadn't even seen a Real Doctor, further confusing him. Because I'm helpful in that way.

"Hey, Mom. Did you see me raise my eyebrows?" he asked with a little smirk.

"Yes, I did, and I was extremely proud," I answered.

This is one of our little private brain tumor jokes. Does your family have private brain tumor jokes? Surely you do. Anyway - when Jules was 7 and first diagnosed, we saw lots of Different Doctors who were not the Real Doctor and one of them was a particular sort of A$$Hole Doctor and I particularly didn't like him for all sorts of particular reasons. The first time he saw Jules, he asked him if he could raise his eyebrows. In response, Jules did a whole lot of bizarre things with his ears, nose, mouth, and cheeks. He also opened his eyes really wide, crossed his eyes, bulged his eyes....all sorts of neat-o tricks. The eyebrows? Remained stationary. I was like, "What the heck, Jules? Dude, RAISE YOUR EYEBROWS." He stuck out his tongue.

The doctor wrote down partial facial paralysis in Jules' Official Chart.

As soon as we got to the car I said, "I swear to god Jules, raise your freaking eyebrows."

He did.

And that's the sort of nonsense I deal with on a regular basis.

We did go eat at our usual China Town establishment, and the owner who remembers us every year came over and talked with us. He likes to talk basketball with Jeff, seeing as how the owner is a HUGE LAKERS FAN and Jeff HATES THE LAKERS. They have a lot of fun. He talked to us for so long that LA-Type-Of-People started looking at us and trying to figure out if we were Important. The guys at the table next to us were making fun of Rick Perry. I tried to hide any little lick of Texas accent I might have because dude, some things are just embarrassing. And Rick Perry's one of them.

I didn't have much of an appetite. We didn't leave China Town and do any of the fun things we normally do while in LA. We didn't even drive around looking for Red Hot Chili Peppers promotional propaganda, even though it is everywhere right now. We didn't even look for Actual Red Hot Chili Peppers. Somehow, we just weren't in the mood this year. We headed back to the hotel where Jules watched hours of History Channel shows - none of which were about history but many of which involved Rednecks of All Flavors wrestling or shooting alligators, trying to dislodge tree trunks, cutting down trees, or driving big rigs on icy roads.

Normally, I wouldn't have trusted that the Real Doctor would even call back, because even though he is Real, he is still a Doctor. But we were going to be attending my uncle's funeral and so I figured he'd call then - because sometimes Murphy's Laws trump Normal Doctor Behavior. I was right. So after the burial, we pulled into a convenience store and the Real Doctor said, "It's grown and I'll call you back tonight to discuss options." He didn't waste a lot of breath on it, and we drove home in stunned silence. The rest of the day was rather long and consisted of me walking around with a phone stuffed into my bra...walking, walking, wandering around aimlessly, trying to focus.

It was 9:00 pm when he finally called. And he was very sweet and awkward because we had him on speaker phone and awkwardness is a requirement for speaker phone etiquette. I don't normally put anyone through the speaker phone experience, but these were extreme circumstances.

So we're looking at surgery next year. Not this year. And putting it off until next year fills me with both relief and hysteria. Try to balance those two. I dare you.

But all's good. We're still one of the Lucky Families...we're painfully aware of that. But we're also painfully aware of how we're not special and immune to disaster...we are, in fact, like Everybody Else. Luckily, being like Everybody Else also means that after this brief time of feeling vulnerable and fragile, we'll go back to thinking we're special and immune to disaster. That's human nature.

I, personally, am really grateful for human nature. It's going to kick in any day now...

Well, that is two pretty tough posts one after the other. I don't have anything to offer either, am just feeling for you and will cross fingers and other stuff as long as necessary. Your boy is beautiful. But you knew that already. And clinics and doctors are pretty hard to have to live with - you've been doing great so far - let's say it might very well continue to be great from now on right? And you can share us some of your writing project anytime, you know that too I think. Hugs, jade

My daughter was diagnosed with scoliosis in the 6th grade. Evidently it is a condition that many kiddos with cerebral palsy eventually wind up getting due to the low muscle tone of their trunks....think of a sunflower with a gigantic flower that is too heavy for its' stalk. Anyway - we did the same as you guys. Each year going to the orthaepedic (sp.?) specialists to see 'if the curvature had progressed'. Of course, it had and of course, she eventually had to had surgery - can you say TWO steel rods inserted alongside her spine and riveted to it?? Ouch. Anyway, my point is this: having a doctor that you feel is THE BEST goes a L-O-N-G way towards being OK (somewhat) with your child having surgery. Sounds like you have found 'the best' doctor. That's all you can do, Sardine Mama. And love him ;-} Hugs.

Ah, I'm sending great, fat waves of Positivity to you and your family. You are vulnerable and fragile, yes, but always and also special and immune, because of your energy, your incredible energy, your humour, your kids' natures, your family's awesomeness and your constant Truth.

You have incredible strength; you are funny as anything, kind of insurmountable-seeming sometimes, and then you are also simply a mom, pacing and raw, with a phone stuffed in her bra. Thank you for sharing all this and all of YOU.

I hope the relief and hysteria start to settle down—at least the hysteria part. Thinking of you, sending whatever energy you might like to receive. A hug/ warmth (no! too hot!)/ a smile.

Give your boy a kiss for me. And not in the Gay way but in the "he reminds me so much of John that I want to take care of him" way.I'm sorry that I haven't been around and to see this when you first wrote it.I'm in such a mood these days and now your pain is going to press on me. It's not your fault. I was "born this way". Actually I wasn't. I only became this way when I started having children. I used to be icy-cold. But if all goes as planned, I only have about 60 years of worrying left. Want to get together then for a drink and laugh about old times? Maybe John and Jules will put us in the same nursing-home room. Let's hope!Your Friend, Mark